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“Patients Are Always Left Out”

Yesterday, I was listening to NPR on the way to the store. Around six p.m., they ran a story on health care reform. They talked about how the insurance industry and drug industries are ensuring that their view points are heard by spending millions of dollars on lobbying efforts. The reporter asked, "Aren’t patients missing from this debate?" The health care "expert" they were talking too laughed and said, "Oh, well they’re always left out."

And so it is, while people in Washington play games with health care reform and attempt to position themselves to get the credit (or escape the blame) for the coming reforms, millions of patients sit in the waiting room, unable to be seen by people with the power to change their lives, or their doctors.

Just today, a drug industry sponsored panel was held at the National Press Club. It was called "Putting Patients First." As the blog Duncan Cross pointed out, there was not a single patient who was allowed to speak at this event. The organizers of this conference, which featured Wisconsin Congressman Paul Ryan (R), "put patients first" by relegating them to the back of the room. According to the blogger Duncan, who attended the event, the moderator asked right wing question after right wing question.

And so it is, the very people who know about the strengths and weaknesses of our health care system from first hand experiences have been frozen out. To the best of my knowledge, the President hasn’t met with any patient advocates. By and large, Senators and Congressmen are too busy talking with health care industry lobbyists to actually have face to face meetings with patients. And our concerns, as I learned yesterday, are laughed at on national radio.

Patients want health care reform that works–literally. Patients know that they are basically unemployable because big insurers do everything in their power to make sure that they do not get insurance. Because federal law requires insurance to be offered to all employees if it is offered to one employee, employers have a strong incentive to fire or not hire people with chronic illnesses who can–and want to–work. It’s why the disabled unemployment rate is over 14%.

Most patients I know want nothing more than to be defined by something other than their illness. But the current system makes it so expensive to employ the chronically ill that we cannot find work. All too often, that means we cannot afford insurance.:

When we can’t afford insurance, we cut back on the prescriptions we need to maintain our health and on the doctor’s visits that are needed to ensure treatments are working.

Because we can’t afford proper medical care, we eventually develop very serious–and very avoidable–complications. We end up in hospitals, having surgeries and medications which can cost over a million dollars be administered to us to make up for the fact that the system didn’t allow us to take proper care of ourselves. Everybody ends up paying these costs of this ridiculousness through higher premiums and higher doctor’s fees.

If Washington listened to patients, we’d have a health care reform bill which does the following things: turns employing the chronically ill from being a charitable act into a smart business decision by eliminating the insurance industry’s ability to discriminate against people with pre-existing conditions by charging higher premiums and rescinding policies. A plan that takes patients concerns into consideration would create real competition for the insurance industry by establishing a public option with a floor of benefits, including an out of pocket maximum (which would limit medical bankruptcies); this plan would also favor co-pays over co-insurance.

If Washington listened to patients, we’d have end of life care management that doesn’t cost a fortune. Most patients I know would rather have the money be spent paying for maintenance medications which allow for years of life well-lived than paying for drastic end of life care which pays for two more months in a nursing home.

But Washington doesn’t listen to patients. Instead, it laughs at us while saying that health care must wait, and commenting on the events of the day on Twitter:

Obama speech on healthCareReform Absolutely nothing new Waste of time saying we are going to get that done Baucus and I know that But doRITE

While Senator Grassley and his cohorts Twitter away health care reform, 46 million uninsured Americans are stuck in the waiting room, wondering if they will be able to afford a doctor’s visit or a prescription medication if they get sick.

It’s time for patients to be heard.

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